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Does it seem like Lymphoma or bone cancer, or...?

leebsqweeb
Posts: 10
Joined: Jul 2015

Hello - 

Does this sound like Lymphoma, bone cancer, infection, something else?

39 year old male.  Generally healthy.  Not a hypochondriac, although I can certainly see how people can be given the past couple of months I've been through...

I had a spot on my left forearm about 2 inches up my arm from where my wrist bends that felt like a bone bruise.  (If palm is down it is on the side of my arm up from my thumb) .  Very small spot and it would only occasionally bother me out of the blue for about 2-3 months.  When I tried to feel for it, I couldn't except for one or two occasions.  I also don't recall hitting it.  Some occasional achy bone feeling in that area.    I also have had a couple of nights where I wake up drenched and my sheets are wet, head to toe.  Then, out of the blue, a painless lump developed on the top of my arm in the same spot about 4 weeks ago.    The lump seems as hard and normal skin and is only barely noticable.  I get occational sharp pains in the area and up my arm a bit.  My bloodwrok has come back normal (CBC, Kidney, Liver, Diabetes, etc.).  I was also tested for Rheumatoid Arthritis and inflamation.  All normal.  My doc sent me to an orthopedist, who thought maybe carpal tunnel, and gave me antiinflamatory medication and a brace for 3 weeks.  No changes.  In the three-four weeks since the possible carpal tunnel diagnosis, I have noticed a fullness in my neck that comes and goes, occasional tender spots on my upper arms/armpit,  occasional tender upper chest/shoulder areas, a tender/painful rib and lump on my right side (the pain and lump on my rib comes and goes) and now tenderness in my groin on the right side.  I also get burning pains in my ankles and upper feet and a tightness in my mid-back.  Nothing is constant except the lump on my forearm.  I went back about a week ago for follow-up.  He then did an in-office ultrasound and found a fluid looking growth that goes deep into the space between my Ulna and Radius and wraps around the bone a little.  He studied the ultrasound for what seemed like 5 minutes, then said "I think I want to get an MRI of your forearm, decide what other tests need to be done and go from there".  I had the MRI Thursday morning.  It is now the following Monday afternoon and I haven't received a call.  I'm certainly getting more and more nervous, although my "calm brain" is telling me that if it was serious, they would have called me right away.  

No fevers, occasional times where I can't seem to cool off, no swollen lymph nodes that I know of (but it is hard to tell), a little more tired than normal, normal blood work so far, no weightloss, no loss of appetite, occasional itching but not intense, and again...everything comes and goes, sometimes within seconds.  Thoughts?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

 

Lee,

All of us offer lay opinions and insights here. We can't second-guess your MD.

I would be very surprised if what you are dealing with is in any way related to lymphoma.  For one, the extremeties (arms and legs) contain very few nodes, and are almost never the area in which lymphoma is discovered.  I would not be concerned about lymphoma at all at this point, based upon what you described.

max

 

leebsqweeb
Posts: 10
Joined: Jul 2015

Thank you, Max!  I really appreciate the response.  I hope you are correct.  It will just be fantastic to know what is going on.

Anonymous user (not verified)

i agree that your symptoms are probably not lymphoma, even though night sweats are very suspicious for lymphoma.Lymphoma can occur anywhere there is blood, with or without lymph nodes. However extranodal sites are usually a sign the disease is spreading. I say this because bone marrow manifestation of lymphoma is very common in Stage III-IV of the disease and of course the bones contain no lymph nodes.

i expect you will get negative results for lymphoma. Good luck and please let us know how it turns out. Your info could possibly help others so please share.

leebsqweeb
Posts: 10
Joined: Jul 2015

Thank you for your reply!  I do hope that I get a negative result, as well.  Your description is what has been running through my mind, however.  Is it possible to have no symptoms whatsoever, and then all of the sudden be at Stage III-IV?  I suppose it is.  I will definitely post my results of my MRI for my arm, and any other results that may come about so that hopefully it helps someone else.  This has been very difficult, as I'm sure it most definitely was/has been for everyone else.

Anonymous user (not verified)

i was diagnosed with Stage IV FNHL after a very long diagnosis process. My main symptoms were night sweats but just on the neck, severe fatigue, lower back pain and leg pains. None of these symptoms were specific to lymphoma. Blood work was was all in the normal range and I had no palpable swollen lymph nodes.This went on for years. I was treated for RA and even told I had emotional problems and wasn't really sick. I was finally diagnosed Stage IV follicular after a biopsy deep inside my retroperitoneal (based on an MRI and against the advice of my GP) area followed by 8 nights in the hospital. Bone marrow biopsy also showed 28% cancerous white blood cells. I also had a lump about the size of half a golf ball removed from my right shoulder about 6 months before the biopsy. That was declared benign but by a non- oncologist. After beginning treatment with Rituxan my 10 years of  backpain vanished almost immediately. Leg pains slowly improved after the Rituxan was finished.

I really don't think you have lymphoma. However I recommend dealing with an onology specialist. They are best equipped to diagnose it. Just don't mess around with any other specialists. Also after my experience I would never discourage anyone with non-specific symptoms from getting further diagnosis. Doctors are not God-like and do make mistakes, especially when dealing outside their specialties or GPs. Be in charge of your own health. I like having a treatable form of lymphoma a lot more than I liked being told I wasn't sick when I knew I was. I repeat, go to an oncologist.

leebsqweeb
Posts: 10
Joined: Jul 2015

Your symptoms are sounding very similar to mine.  I actually sweat on my neck all night, almost every night.  I didn't know that was a symptom.  I've only had a couple drenching night sweats since all of this started.  

I love this Orthopedic specialist I found.  He actually listens (unlike my now ex GP) and so far hasn't been afraid to test.  My ex GP thinks I'm crazy.  She actually said that I'm "getting pitiful" and to try and wait it out as long as I can.  For a guy who only ever goes to the doctor once a year to now being "pitiful"...my thoughts on her changed very quickly.  ANYWAY, this Orthopedist is fantastic, so far.  I'll ask him if seeking an oncologists opinion would be a good option, as well.  I like the idea.  I just don't think I want to mess around with whatever is going on.  I do have a bad gut feel about this.  We'll see!  Hopefully today I'll know something...  Thank you again for your replies.  It is helping me.

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi leebsqweeb,

I agree with Max that this is probably not cancer, but as Max said, only the doctors can find out what it is. It is good that you see to that you are thoroughly examined. Now wait for the MRI results, and then go on seeing doctors until you get a proper diagnose. Try not to worry too much. Good luck!

Sten

leebsqweeb
Posts: 10
Joined: Jul 2015

Thank you, Sten!  I plan to keep getting checked and tested until this gets figured out.  It certainly isn't normal by any stretch of the imagination.  Something is going on.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Yes, lee, continue to be checked. But do so in a calm, systematic manner.  Doctors make mistakes and miss things, but mostly they are not idiots.

It is impossible to pick up "tone" very well in emails or texting, but I made the comment above because you sound a little frantic to me. If you are not, sorry.

If you have any trace of lymphoma (which, as I said, I doubt -- like your doctor), then it is very likely early and mild. You are not about to "die" from lymphoma, and in fact even most Stage 4 lymphoma patients do not die of the disease, because most strains are just too treatable.

Be calm and optimistic, and know that lymphoma most likely is not something you have.  Some writers here share horror stories of doctors missing their diagnosis, but there are thousands of new lymphoma cases ever year, and the number of screwed up diagnoses you can count on your hands, as terrible as they nonetheless are.  I know that medical mistakes are very common in the US. It is just that they are not the norm.

Peace to you,

max

 

leebsqweeb
Posts: 10
Joined: Jul 2015

Sitting here just waiting for my mri results.  The docs office said it would be today.  Staying calm.  If needed, I will keep looking for answers, calmly.  It doesn't help to get stressed.  Thanks for commenting.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Lee,

If the doctors promised you results on July 15, and you have not heard from them on July 16, call them, and ask why not.   It is easy and free, and only takes a few minutes, after you get through the options on the office telephone.

Most large practices get a stack of lab results every day, and usually some office clerk routes these around. It is often the case that stuff is missed for a few days. But if a patient calls, the cause of the delay is usually determined.

 

Hoping you get good news,

max

leebsqweeb
Posts: 10
Joined: Jul 2015

...and they still don't know what is causing all my symptoms.  The MRI results done on my arm do show "tenosynovitis occuring in the setting of intersection syndrome of the forearm with edema", so I got a nice cortizone shot.  It also shows "Marrow space is unremarkable".  Perhaps a trip straight to an oncologist is in order, however, I feel weird doing that with all of the normal blood, unswollen (but sore) lymph nodes, and relatively uneventful mri results I'm getting.  This is getting expensive, and frustrating.

leebsqweeb
Posts: 10
Joined: Jul 2015

I'm also itching like crazy all over and my mouth feels dry even after just sipping on water the last few days.  Are these also symptoms?

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